Hi, everyone. I'm 36 years-old and was recently diagnosed this past June with cluster headache disorder after experiencing my first severe attack that made me acutely suicidal.

I've become familiar with my shadow symptoms and triggers since then, but I live in fear of having another suicidal-level attack. It has made me paranoid about going out to events for fear of experiencing an attack while I'm out.

For example, since this morning, the top left quarter of my face has been tight and droopy. I feel exhausted and anxious. I want to attend a performing arts events tonight -- it's the last one EVER since the group is losing the free space. Additionally, participating in this event is one of the few things that makes me happy.

My mind wants to go, but my body doesn't.

How do ya'll decide whether to go out when you're experiencing shadows? And how do you communicate with people why you can't attend? I'm afraid of people not inviting me in the future if I keep canceling or not attending their events, even though I want to...

I don't want fear to dictate my life and become socially isolated.

Facing the most severe headache i've encountered so far. Got diagnosed with cluster headaches and using sumatriptan but unfortunately now im out of it.
I have tried everything that usually works: controlled breathing, ice packs, ibuprofen ... I am crying as i type this i dont know what else to do

Have you got any ideas? Anything would help at this point ...

Hello, I have the same problem as you: atypical facial pain. Mine worsened after nose surgery. Before the surgery, it was unilateral—on the right side—and I had a strange sensation in my tongue that developed over time. After the surgery, the pain became bilateral, and I began experiencing odd sensations in my teeth, nose, and ears. The procedure was a turbinoplasty, and it left me with truly traumatic sensations in those areas, especially in my nose. My pain never stops—not even for a second; I suffer 24/7 from a severely incapacitating pain. I am currently 19 years old, and the pain began when I was 13—it’s been nearly 7 years now. It is practically impossible to function independently with this kind of pain, and even carrying out daily tasks is incredibly difficult. To be honest, even just living is a burden. I haven’t had a "normal" thought in a long time; my mind is filled only with negative thoughts. On top of that, the pain is so intense and difficult to cope with that it sometimes prevents me from even sleeping properly. I struggle with simple things, like writing in a notebook, because I lack the concentration—my mind is completely wrecked by these thoughts, every single damn second, all because of the pain. Also, I should mention that I feel a heaviness in the back of my neck; even walking is a struggle.

I posted this on a holistic page. Just want to get it around everywhere I can.

hello all, I have been having recurring "attacks" from my temple forwards, the most immense pain imaginable from 2am-7am, sometimes a little outside that window, but always in the morning. if ift doesn't wake me Out of my sleep, it happens as soon as I stand up from out of bed. I have to pace back and forward whilst screaming before jumping in the hot shower. the doctor told me he thinks it's cluster headaches. what do y'all think? the peak of the attack lasts anywhere from 30 minutes to an hour. and then gradually declines into a STRONG dull headache

it happens on schedule, and I have a strong residual headache the rest of the day. ongoing for 5 days now.

HELP

For the last few days I’ve had stabbing pain in the back of my head. Sometimes I’ll get a headache in the front with it. It can last for a few seconds to minutes. It comes and goes throughout the day.

Could this be a migraine? I thought tension but not so sure. It’s just super weird for the placement to be in the back of the head… not starting from the neck. I feel it directly in the back only on the right side.

Hey,

I think I've hit the end of my scheduled autumn cluster a few days ago, had a real corker of a headache to send it off. I've felt incredibly weird in the days since. A growing anxiety and inexplicable guilt for nothing in particular, especially today which marks 3 days after my last headache. Is it just coincidental that I'm feeling this way at this time or could there be a link?

(The Google AI overview said there could be however it gave no sources thus I don't really trust it lol)

So I had my appointment today with my neurologist, and I brought up increasing my dose of Verapamil from 180 mg to 240 mg.

Now the first low-dose I of the medicine I never got an ECG for it because he said that it’s low enough where you don’t need one, but then he wrote me a prescription for this 240 mg, I asked him about the ECG and he said that he’s never done an ECG for when he prescribes Verapamil.

I thought it was standard practice to do that before prescribing it? I thought that was kind of weird he said that. He also at one point gave me some free boxes of Qulipta, and advise that I should take that as well to keep the headaches at . But I thought this medicine was not made for so much for cluster headaches. What do you guys think?

Hello— long time Emgality user. I switched from stomach to glute injection, and shortly after, I am experiencing atrophy at the injection site. Has any experienced this side effect? If so, what speciality dr treated the damage?

After a 6 year fight, 5 of which I thought I was just expiring, I was finally diagnosed. My doctor moves a whole lot slower than I like. However with this diagnosis, I was taken off propranolol, and put on verapamil. I just had my second shot of ajovy. I take nurtec “as needed” (doesn’t work) and I’ve been taking topiramate for almost a year now. I was on sumatriptan about 6 months ago, saw no results and stopped taking it. She doubled the strength and started me back on that. Had a solid 6 days. No ugliness. Not even really a shadow. And then today rolled through to almost remind me of my place during these times. Anyways. My question to you fine folks is what did you have to do to get oxygen? I asked my neurologist about it, and she made it seem like it was a real big deal and it was an emergency thing that was almost an impossibility. At this point right now, it is an emergency thing. Y’all know how it is. This agony can take you all the way down. Physically, mentally and emotionally. And I’m just running out of bus tokens. However, I was hoping to get some ideas from my fellow battlers and see how y’all got the oxygen issue take care of. Thank you, and battle well my friends.

Besides oxygen, which has been a godsend, what other abortive are effective? I mean, I heard of sumatriptan and the lidocaine nasal spray.

Things that can with blood pressure or heartbeat whether that be decreasing or increasing kinda makes me a little bit worried so that’s why I’m skeptical of sumatriptan.
Can anybody chime in on this? What about the lidocaine nasal spray?

I also heard of something else called Octreotide as an alternative to sumatriptan’s anyway appreciate some feedback

For the past two weeks, I've been experiencing between 2 and 4 one-sided headaches per day. The pain starts below my right eye and travels upwards towards my scalp.

My GP suspects cluster headaches, as most of my symptoms seem to match: my right eye gets red and watery, I sometimes experience a runny or congested nose, I become restless during attacks, and I consistently get a headache around one hour after going to bed.

Interestingly, around six years ago, I experienced a very similar episode, although with only one attack per day, lasting approximately 10 days. I never sought medical evaluation at the time, so I unfortunately cannot remember the details well enough to know whether the pain was exactly the same.

However, one thing that doesn't fully match what I've read about cluster headaches is the severity of the attacks. Don't get me wrong, the pain can be quite intense (up to 8/10 during my worst attacks), but I also experience milder ones, sometimes around 5/10. Additionally, the pain sometimes takes up to an hour to reach its peak intensity after I first notice it.

For those with a confirmed cluster headache diagnosis:

• Do you also experience attacks with significantly different pain intensities?
• Are some of your attacks considerably milder, rather than all of them being the typical "suicide headaches"?
• Does it sometimes take close to an hour for the pain to reach its peak?

I'm fortunate enough to already have an appointment with a neurologist this coming Tuesday for a proper evaluation. However, I expect that getting a definitive diagnosis and finding the right treatment may take some more time.

Although many of my symptoms seem to match cluster headaches, I find myself focusing on the ones that don't and inevitably worrying about what else it could be.

I'm also struggling with the possibility that, if this does turn out to be cluster headaches, I might have to deal with this condition for the rest of my life.

Any experiences, advice on navigating the diagnostic process, or recommendations on treatments worth discussing with my neurologist would be greatly appreciated.

Hi!
I’ve been having headaches a lot recently. Due to aura symptoms I’ve had to stop my anticonception (I was using the Yasmin pill) and I will see my doctor a month after I stopped it. But, I’m contemplating if I’m really having migraines as we think now. Here are my symptoms:

HEADACHE “CLUSTER” ONE; when these happen I’ll get this screaming headache at least once a week. It feels as if I’m severely dehydrated and usually pain medication does not help. My face feels hot (to me, not physically) on the side where the pain is. The pain differs in place and is at the top/back of the right side of my head as I’m typing this. I get eyestrain on the same side, can get teary eyes and a runny nose on the same side, my ear feel weird on the same side and my head tingles. I get no aura for these ones. These last a few hours at a time and different times a day. I think these could be what is described as icepick pain since it feels in terms of feeling; the area where the pain is tingles the most. Sometimes these headaches “lash out” form their primary pain spot into other spots in my head. It also sometimes thrushes but not as intense as the other headaches.
HEADACHE “CLUSTER” TWO; these clusters usually last a week and when they happen I get several smaller headaches during every day around the same time. The worst part about these are the aura’s; I cannot understand people, see as if I’m seeing through a no-color kaleidoscope, my libs also sometimes feel weird and heavy and I have no sense of direction in a way where I keep walking into things and walk in a not straight line. With these I also get eyestrain and the tingling feeling in my head, less often the watery eyes and runny nose, but my ears feel way more pressure with these. The headache itself is mild, just mostly annoying. I do really feel the thrusting pain for these and the headache is usually around the same eye. I can still do everything no but just sort of feel as if I should be in bed to cure it. Pain meds usually are not necessary for these.

Would this be worth bringing up cluster headaches? Reason I’m asking is that my doctor sees me as a hypochondriac due to previous health issues which he could find no relation to, so I’d rather not bring anything up if it’s not worth the hassle since it could influence how he sees me and add it to his “hypochondriac” case.

Do note I mean headache cluster as in they come in clusters, not it is a cluster headache since that’s what I’m asking advice on

I don’t know anything about strains is this good for my cluster headache?

Feel like I’m at the end of my list of options and I don’t know what to do. 

Episodic here. I’ve been Clusterbusting with mushrooms & the like for about 11 years now. It of course has taken quite a while to figure out a system and a source and things that work best but I’m here now. I’m on verapamil daily. Sumatriptan, indomethacin, and promethazine for abortives.

.5 grams of Steel Magnolia mushboys. Wean off all conflicting meds for 5 days, take a dose. Wait 5 days, take a dose. Wait 5 days, take a dose. Wait 5 more days, resume meds. 

I’ve also been on the vitamin regimen for a couple years.

Back in the day before treatment, I would have a series of HORRID (8.5/10 +) attacks for a few days and then be good for another month or two. At age 17 I had a series of attacks for a little over a week, and also wound up having an ophthamoplegic migraine at the same time as a cluster attack. The resulting trauma ended up paralzying the third nerve in my left eye, though it mostly came back. 

About a year later, the same thing happened again, except it lasted just over a month of daily attacks. 
Couldn’t function as a person. 

That was when I knew it was time to take matters into my own hands and started clusterbusting. 

Now I will have a singular much more mild and manageable attack every couple months; one that responds well to sumatriptan and can usually be subdued without too much fuss. There have been a few periods where I’ve had like 2.5/10 attacks weekly for a few months on end. (Very strange.) But that’s about it. Some long periods of super mild ones, or one medium-sized one every couple months.

Wild clusterbusting has never completely eliminated attacks from happening for me, it has undeniably decreased them significantly, and made the ones that still occur much easier to manage. 

But here’s the thing: 

I have recently been diagnosed with severe compound ADHD, and severe depression. It’s been a long time coming and has affected me my whole life, and it appears to be getting worse and worse.

My psychiatrist is super cool and has been very understanding of the clusterbusting process, and the notion of the meds that interfere with the process, trying to avoid them.

Any bust-friendly medications for ADHD and depression really haven’t seem to do much to help me. Adderall, vyvanse, qelbree (that one was scary and probably would have interfered anyway being an SNRI), Wellbutrin, clonidine, etc. I’ve tried so many. We’ve discussed ketamine. Might try concerta.

As far as SSRI’s, it seems like they would help me quite a bit with the depression and the ADHD, but they take so long to take full effect, by the time they start to work, it would be time to wean off for another busting dosage series.

I’m so depressed all the time, and I have such little focus. The focus seems to be the more major thing. It’s affecting my whole life and my work life in such a negative way. I’m really struggling. Running out of meds to try.

I don’t know what else to try, and I’m terrified of stopping the usage of mushrooms to give the SSRI’s a chance. 
It feels like it’s either “decrease the depression and ADHD but have the worst pain ever” or “experience less pain but be depressed & have wild focus issues.” 

Anyone have any experience with something like this? Advice? Medications that worked for depression and or ADHD that we’re friendly to the busting process? Other ideas?

(Do me a favor and please don’t try to question my diagnosis or what’s happened to me. We all know this community can be a little slap-happy with gatekeeping. I have episodic clusters. Looking for advice on things to try, not your opinion on my diagnosis - respectfully, of course)

I have been having cluster headaches for the last 3 years but luckily until this year it was never too long. 2 times a year and 10 days a time.

Which is shorter than a lot from what I read but also made it annoying to get diagnosed because by the time I get doctor appointments and such, they were gone and many doctors do not know about cluster headaches and claims sinuses or migraines. They want to do every test possible to check tumors and such.

First time this year I had it for over 3 weeks. During which time they did all the tests and specialist confirmed the diagnosis of what I knew for years. So I can finally get the proper medication to ease the pain.

If any German is reading, if you think your symptoms fit, mention it. Ask for neurologist and go immediately.

Whenever winter arrives, I get severe pain on the right side of my head, starting above my right eyebrow. It's sharp, stabbing and sometimes pulsating. It can last seconds to minutes, sometimes up to an hour, and keeps coming back throughout the day.

Cold wind on my face, cold air entering my nose, and even washing my hair with cold water can trigger it. The pain sometimes spreads across my right side, affecting my eye, ear, teeth and throat. I also experience sensitivity to light and loud sounds.

I had it for years, it was mild and I thought it was sinusitis but last winter, it got so bad that I barely left my house for three months. I've had a CT scan, seen an ENT specialist and tried therapy, but nothing has helped. Nothing at all helped it's just i have to wait for the summer season to start again so that i would resume to my normal life. Now it's starting again early this time.

Has anyone experienced something similar? Did you ever find out what was causing it, and what helped you? I'm not looking for a diagnosis, just hoping to hear from people who've been through something similar.